Saturday, September 20, 2008

Below is the latest update from Josh's trip to CA this last week.

They screwed up again so I spent 2 extra days out there. I don't understand how a doctors office can operate like they do. My scan was Monday and my treatment was supposed to be on Wednesday. I did the math and it was cheaper for me to stay in Santa Monica between the scan and treatment rather than fly in and out each day. The scan on Monday went smoothly and afterwards I went into the Sarcoma Center to get some blood work done so I could get my next round of treatment on Wednesday. They finished what they needed to do, but failed to tell me they were done and let me just sit there for about an hour before asking me why I was still sitting there.Pissed off! It's one big open room and they had passed by me I don't know how many times. Was it so hard to say "that's all for today"? I clarified that I didn't need to do anything else until Wednesday and that I could come in first thing when they opened to the start treatment. They told me that was it and that they would get me in and out Wednesday morning so I could get home to my family.

So Tuesday I went down to the 3rd St. Promenade to catch a movie (couldn't think of anything else to do). I had a bit of time to kill so I walked around and found a cool toy store that had LOTS of Star Wars toys. They had a few really cool vintage toys, but money is tight so I had to restrain myself. I went in first thing Wednesday morning (first one there), got my weight, and sat down in one of the chairs. After about 15 minutes they came around to check my vitals and accessed my port-a-cath and drew some blood. After another 20 minutes or so I heard them ask if it was OK to start me. I heard the head nurse say no and that I need to talk to the doctor. I asked, across the room, if there was a problem with my PET scan from Monday and she said "yes it wasn't good". So I figured that there had been growth since my first treatment and that they were not going to let me continue. The doctor came in and walked past me several times. I asked one of the nurses what was going on and she went to check. I heard the head nurse tell her that they wanted me to continue with the treatment and to go ahead and start me. After some time had passed (they still hadn't started me), the head nurse came over to me and said that the drug company screwed up and that my medicine wasn't there. She said I needed to stay another day and that my drugs would be there Thursday morning around 10:30. I'm a grown man but I'll admit that it took all of my strength to keep myself from crying. I re-emphasized how expensive these trips are and said that they need to make sure my drugs are there before I fly out there. They should have verified that my drugs were there on Tuesday knowing that I would be there Wednesday for treatment.

I was there for about another 2 hours before we finally got everything settled. The drug company agreed to pay for the additional night at the hotel, the additional day of the rental car, and the cost of changing my flight. The only thing I don't get back is the extra day away from my family. What else could I do, so I got out of there and went back to my hotel. Luckily I was able to get my room back and then I spent the next hour changing my flight and rental car reservations.

I went in Thursday morning a little early to make sure that they got me started on time so I could make my flight. Everything went pretty smoothly. I was hoping to get done in time to make an earlier flight (since they paid to change the ticket, my ticket became a normal ticket so it could be changed again without a fee). They finished up and said I was good to go. I still had time to make the earlier flight. I made a quick trip to the bathroom and when I came out I heard them say "oh, there he is". AARGHH!Pissed off! .... NOW WHAT? They told me that I need to stick around because they needed to do another EKG. I asked why and they said that when they examined me earlier I had an irregular heartbeat and to be safe they needed to do it. Both of the examine rooms had patients in them so I had to wait until a room was free. My chances of getting on the earlier flight were diminishing. They finally got me in and did the EKG and I got out of there as quickly as I could. I made it to the gate of the earlier flight with 20 minutes to spare.Blue Bounce Luckily the flight was pretty empty so I got a good window seat.

Hopefully the next round will go smoothly. I'll be doing day trips every other week from now on. I'll be sure to leave enough time between my flights in event of delays.

Thanks again for all the prayers, please keep on praying.


Wednesday, September 17, 2008

Below is what I copied from Josh's 4wheeling site. Sorry it's taken so long to update this. Like normal things are pretty busy around here.

After some hassles from the California Doc's office, I finally got everything taken care of to start the new treatment. To keep this short, lets just say I had to make a few trips out there to get all the paperwork, tests, and scans done. I finally got my first treatment of the new drug last week.

I've been having the side pains again and I'm back on the pain killers (3 times a day). Today I met with my Tucson doc for my monthly exam. I showed him a new lump I found on the right side of my ribs near the lump I had found a month, or so, ago. This new lump felt harder like it was bone. He examined the area and said that there are actually 2 new lumps and he said it wasn't bone, but felt like they are attached to the ribs. He feels that they are tumors based on how they physically felt. Best thing we can do is hope that this new treatment will be effective in either getting rid of them, or keep them from growing. They are getting a little painful when I lay on my right side. Every once in a while it feels like needle pokes.

Next week I'm out there for 3 days because my scan is on Monday and my treatment is on Wednesday. It was more expensive for me to fly home and come back, so I'm just going to stay the extra day. Maybe I'll actually get out of the hotel room and drive down the street to the beach. I think I'm about a mile from the beach each time I go out there and I still haven't been down there. Either that or maybe I'll find one of those go-kart tracks and get a few laps in.

Then I'll be going out for day trips every other week after that. I'll have PET scans here and there that will require extra trips, but those should be more spread out. Maybe I should just move to California. I think I could rent a loft apartment for about what I pay for my mortgage here.

He left for CA Monday morning for the next round of treatments. Please pray that things will go better this time and that he'll have a safe trip. When he went out the first time he was told that he had done everything they needed him to do and that he could go home. After he flew home they told him they still needed him to do a few other things so his next trip out lasted longer than it was supposed to.

Having to go to CA so often now is becoming physically and financially draining. He's thinking about selling his "rock crawler" (technically I think it's called an FJ40 Land Cruiser) to help pay for his trips to CA. Please pray that everything will work out. Please pray that God will give him the strength and the money he needs to make these trips. If anyone knows someone in the Santa Monica area that might be willing to let Josh stay with them or help with transportation, please let use know. Thank you again for all your prayers and support! Please continue to pray that these treatments will work and that he will get some relief from the pain.